Hope to all: Hello all the girls I have been... - My Ovacome

My Ovacome

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Hope to all

Justyns profile image
32 Replies

Hello all the girls

I have been reading your posts since I got my diagnosis last year 14 feb 2017.Initially been told just a shade on the ovary.Then quickly march stage 3c advanced low grade syrus resistant to chemo.That news burst my buble .After agressive chemo taxel and sth else (sorry chemo brain).no hair told I can have an operstion.September unsuccesfull op.In so much pain stapled like an old couch kicked off from hospital Royal London.Unbelievbly in pain.Been told got months to live.More chemotherapy and avastin.So far 8 avastins to go and been told my tumor shrunk from initially 11cm .from a start to now 2.3cm.I am writing it incoherently to give people HOPE.I am taking cbd oil 15 drops curcumin 8g liposomal vit c 8g cider vinegar drink.Something is working.

Love you all.I am only 49.

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Justyns profile image
Justyns
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32 Replies
izzybruce profile image
izzybruce

Hope your not in pain now,and that you will have years not months, I know what you mean,my bubble was well and truly buest last March 2017, how different things are now, xxx

Justyns profile image
Justyns in reply to izzybruce

Gave myself till September.Now maybe a bit longer.

Irisisme profile image
Irisisme

Hello Justyns,

It's a lovely photo!

That sounds like a pretty horrid time you've had. I hope you can find some joy from someone or something.

Glad to hear something is working .

Iris XX

Justyns profile image
Justyns in reply to Irisisme

Thank you.I lived from hour to next hour.Now I believe anyone can do it.

Cropcrop profile image
Cropcrop

Hi Justyns,

What a stunning photo and a beautiful smile thank you for sharing with us, you’ve had a really rotten time but something is causing a positive physical reaction in you so keep doing what you’re doing and hopefully prove them all wrong. Keep as well as you possibly can be lovely ❤️Xx Jane

Justyns profile image
Justyns in reply to Cropcrop

Thank you so much.when you are at the bottom as see no way up....thank you

Seasun36-uk profile image
Seasun36-uk

Hi Justyns,

Glad you’ve posted. Welcome to this forum, although I know you’ve been reading posts. Well done you! Keep doing what you’re doing - may it be years that you have ahead of you!

Can I ask - why couldn’t they operate? Could they now?? Linda x

Justyns profile image
Justyns in reply to Seasun36-uk

Hello.Operation failed becausecwhen they open me up the cancer was spread in many more unoperable places.Now the small bits completly dissapear and the rest calcified.hugs xxx

January-2016-UK profile image
January-2016-UK

It sounds really good news about the tumour shrinkage. In what way was your op unsuccessful?

As you say, something is working so keep it up.

Justyns profile image
Justyns in reply to January-2016-UK

Hello ct scans are not 100 percent accurate I was told.Cancer was in many blood vessels unoperable.hugs

I’m glad something is working we have to grasp whatever it is , you look like a very beautiful positive lady & I believe that helps a lot stay strong xx

Justyns profile image
Justyns in reply to

I never thought I could fight it.I went along with treatment.So even more glad sth is working.hugs xxx

Hi Justyns, so glad you decided to post we all need someone who understands to talk to (correspond). When I was diagnosed my family were told I would not see the year out that was ,3- 1/2, years later I'm still here, many ladies have proved them wrong.

take care of yourself Lorraine xx

Justyns profile image
Justyns in reply to lorraine71-Australia

I did not believe I could do anything.I went along with the treatment but cancer took my life away so this news gave me some hope.In some places it dissapeared rest calcified .Still sinking inn hugs xxx

Justyns profile image
Justyns in reply to lorraine71-Australia

What a positive news!!!.For a long time i did not see the light in the tunnel...Now i can

julia8163 profile image
julia8163

Hi justyns, keep going and stay positive. Well done. I also take cod liver oil and vitamin c.

Justyns profile image
Justyns in reply to julia8163

I am not sure what works.I will take it all.love xxx

Madmarilyn profile image
Madmarilyn

Thanks for great post, long may you thrive, Im taking curcumin too!

Justyns profile image
Justyns

Thank You.all the best...xxxx

MartaCiom profile image
MartaCiom

Hi Justyns. What a beautiful smile. With your attitude and strong will tgere is a long bright future. I keep my fingers and toes crossed for your full recovery. Xxx

Justyns profile image
Justyns in reply to MartaCiom

Thank You and bless you xxx

ellseybellsey profile image
ellseybellsey

What a lovely picture so glad to hear you are having a positive response to something and not in to much pain.

Ellsey xx

Nancy222 profile image
Nancy222

This is all encouraging news!

Did the doctors have an explanation for the calcification? I had two ground glass nodules in my lungs which became calcified (which is our body's way of dealing with the invader). I firmly believe it was because of my meditation (and my GP supports my thoughts).

Fingers crossed for you.

And your hair is gorgeous! I love that silver grey.

Justyns profile image
Justyns in reply to Nancy222

There was no explanation for the calcification.Went there alone got owelhamed with the news could not concentrate or ask any questions.

Nancy222 profile image
Nancy222 in reply to Justyns

I understand. It's hard to take in the information. Big hug of support.

Maus123 profile image
Maus123

Hi Justyns,

I'm the same age, stage 3a low grade serous ovarian cancer (albeit operated/resected twice now). I think low grade tumours are still a bit of a mystery beast in the medical world, ever since experts recognized that those cells may react differently to treatment than the 'standard' high grade ovarian cancer, which often responds well to chemo. Low grade cells might respond, or they might not. Your medical team might be open to try alternative options, if they fit your disease profile. The trick is to try out what works with your tumours (shrinking them or at least keeping them stable), stick with it until/unless that stops working , and then jump to the next treatment option.

Glad to hear though that Avastin works for you and has dropped the tumour size. That's great news!

Recent research from the US (Dr Gershenson from MD Anderson in Dallas) suggests that hormone maintenance therapy could in some cases be beneficial for prolonging the time between recurrences, for low grade patients, i.e. anti-hormon treatment / aromatase inhibitors e.g. Letrozole.

If/when needed, you could maybe ask your medical team about Letrozole?

All the best and may you have many more years to enjoy life.

Maus

Justyns profile image
Justyns in reply to Maus123

Wow.Thank you so much for your knowledge I feel I am treated with not much information from doctors just relay really on my own research.The way I was given the news got me into prepearing for the end.Sorry not explaining properly English is my second language.Thats why this gave me some hope thats not the end.love j

Maus123 profile image
Maus123 in reply to Justyns

You could also get a second opinion from another hospital. I do that before every major treatment decision. Most of the time, all it takes to get that started is an email to the gyn. oncology secretary of the oncologist in that place, where you explain your case and attach all the relevant medical history and information.

They should definitely give you the details though, in your original hospital. It might also be worthwhile to bring a translator to the consultation, when you meet the medical team again. Don't be shy about asking for suitable clinical trials either, like LOGS.

All the best.

Maus

Jo-Jo1-UK profile image
Jo-Jo1-UK

Hi there...so pleased to hear your tumor is shrinking, let’s hope things continue to improve. Glad your still smiling despite everything your going through. Best wishes, Jo xx

Justyns profile image
Justyns in reply to Jo-Jo1-UK

Thank You so much.I feel i got so many friends.Cancer is a lonely experience...I am here a little bit longer

Luckydog11 profile image
Luckydog11

Glad to hear your news. I also tale the CBD oil but only 3 drops thinking of increasing. I take curcumin too. I sm thinking of trying apricot seeds in capsule form. Do you know anything about that? Happy for your success.

Justyns profile image
Justyns

Hello.I take 15 drops of cbd.stopped antidepressants.curcumin 8g daily also cider vinegar 20 mls with water before meals and 8g of liposomal vit c also biobran 1000mg japanees immune booster.I could be on chemo.Not many side effect that actually saved my life.I am scared to stop any of it.love j

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